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Marco (with Long Covid)

@etzsepp.bsky.social
226 followers 211 following 27 posts

#LongCovid patient #UniteToFight2024

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Reposted by Marco (with Long Covid)
Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 29/01/2026
Wie Samuel seine Realität als Schwerst-ME/CFS-Erkrankter schildert, mag für viele wie ein Bericht aus einer fremden Welt klingen – für mich ist sie nur allzu vertraut. Denn seit fünf Jahren, seit sich die #MECFS-Erkrankung unserer Tochter Mila (23) www.furche.at/gesellschaft...
furche.at
Mutter einer ME/CFS-Betroffenen: „Politik und Medizin müssen handeln“
Ein 21-Jähriger mit schwerster ME/CFS kündigt assistierten Suizid an. Eine betroffene Mutter fordert ein Ende der skandalösen Ignoranz.
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Reposted by Marco (with Long Covid)
It's ME(Jaime) @exceedhergrasp1.bsky.social · 03/04/2025
I want to remind everyone that this summit is open to the public and free! You could even design an interprofessional event on #MECFS or #LongCOVID that gets funded. REGISTRATION DEADLINE IS TOMORROW, early, so register today if you're interested!
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Reposted by Marco (with Long Covid)
Andrew Green @andrewg76201347.bsky.social · 15/11/2024
Some have asked so..Here's a list of the meds/supplements/other treatments that have helped us go from severe #MECFS to moderate (housebound) as at 2024. Long list. No magic cure. ymwv. We’ve kept everything that helps a bit. If we stop any, we get worse again. 5 yrs to get to this point. 1/6
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Reposted by Marco (with Long Covid)
Sus Scrofa @susscrofa.bsky.social · 16/01/2025
Professor Dr. med. Hans-Christoph Diener, emeritierter Professor für Neurologie in Essen und einer der prominentesten Neurologen im deutschsprachigen Raum, hat eben im Streamed-up explizit betont, dass Long Covid NICHT psychosomatisch, sondern ORGANISCH ist. 🧠
Screenshot von Professor Diener mit Abbildung aus NEJM 31.07.2024, die die komplexen Mechanismen von Long Covid darstellt.
Screenshot von Professor Diener mit Abbildung einer schwedischen Studie, die zeigt, dass COVID-19-Impfung das Risiko von Long Covid deutlich reduziert.
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Reposted by Marco (with Long Covid)
Chronic Illness Humor @chronicillness.bsky.social · 16/01/2025
Sometimes I'm not symptomatic at all... And other times I'm awake.
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Reposted by Marco (with Long Covid)
It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/01/2025
On the #NIH advocacy call right now. Koroshetz on, discussing the new Vernon et al. paper distinguishing between #pwME post-COVID versus those we cannot PROVE had COVID. ~ 0.9% in those we can't prove had COVID vs ~4.5% in those who were in the post-COVID group met dx criteria for #MECFS. 🧪🧵
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Reposted by Marco (with Long Covid)
Heike @heikewigr.bsky.social · 14/01/2025
“Imagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you’re told, ‘Hey, good news, everything is normal” .... Excellent article about mistreatment of #Longcovid similar to what has happened to #MECFS patients for decades. #medsky
time.com
Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.
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Marco (with Long Covid) @etzsepp.bsky.social · 13/01/2025
Hi @exceedhergrasp1.bsky.social How could we get in touch ? I want to discuss some ME developments #MDC002 #MITODICURE
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Reposted by Marco (with Long Covid)
Chantal Britt @chantalbritt.bsky.social · 11/01/2025
We finally managed to move all our Swiss long covid and myalgic encephalomyelitis advocacy accounts away from hell. You find patient organisation Long Covid Switzerland under @longcovidch.bsky.social and Long Covid Kids Switzerland and their families under @swisslc-kids.bsky.social.
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Reposted by Marco (with Long Covid)
Ruth Ann Crystal @drruth.bsky.social · 04/01/2025
Long COVID Labs (@longcovidlabs.bsky.social) announced on X a case series study testing ⭐PAXLOVID + PEMGARDA⭐ to treat #LongCOVID! Long COVID Labs is using DeSci trials. Patients & researchers upvote possible treatments for trial. I'm working with them. x.com/longcovidlab... #medsky #IDsky 🛟😷 🧪
Light purple circle with Paxlovid in it that overlaps with a darker purple circle that says Pemgarda. Both circles have a black and white oval saying FDA Approved.
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Reposted by Marco (with Long Covid)
Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 06/01/2025
ANNOUNCEMENT: international (hybrid) workshop on POSTVIRAL ETHICS Date: 3 February 2025 Place: Radboud University Workshop details and the programme can be found here: www.ru.nl/en/about-us/... Registration here: forms.office.com/pages/respon... #LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
ru.nl
Postviral Ethics - RCPS & PCNN | Radboud University
Workshop for Post-COVID patients and organisations concerned with Post-COVID.
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Marco (with Long Covid) @etzsepp.bsky.social · 06/01/2025
Oh no! I am lost 😩
media.tenor.com
a man in a suit and tie stands in front of a flag with a smiley face on it
ALT: a man in a suit and tie stands in front of a flag with a smiley face on it
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Marco (with Long Covid) @etzsepp.bsky.social · 04/01/2025
I have started a birthday fundraiser for long COVID biomedical research and clinical trials. All donations will go to organizations actively involved in research activities 🔬 👩‍⚕️ Please share it widely 🙏 Link: gofund.me/be1b090d
gofund.me
Donate to Supporting Long COVID Research for a Healthier Future, organized by Marco Wetzel
Dear friends, family, and compassionate supporters, I am reachi… Marco Wetzel needs your support for Supporting Long COVID Research for a Healthier Future
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Reposted by Marco (with Long Covid)
Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 04/01/2025
#Maraviroc after-effects just keep on giving. Last night, out of nowhere when I was walked inside my house I just suddenly collapsed on the floor. Crazy sh**. No idea what all of this is. #LongCovid
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Reposted by Marco (with Long Covid)
Anne Vroegindeweij @thisistheillme.bsky.social · 06/12/2024
Been taking low dose rapamycine for 4 full weeks now. Haven't finished the experiment but 3 things so far stand out: 1/
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Reposted by Marco (with Long Covid)
Sue @inkblue01.bsky.social · 27/12/2024
Gentle reminder that the patients that are suffering the most are locked out of clinical trials. You need to be moderate to mild to be 'healthy' enough to enroll.
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Reposted by Marco (with Long Covid)
Waldmeer @waldmeer.eurosky.social · 27/12/2024
Published today! Carmen Scheibenbogen, Klaus J. Wirth: Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence doi.org/10.1002/jcsm...
doi.org
Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
Background Recent studies provide strong evidence for a key role of skeletal muscle pathophysiology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a 2021 review article on the pa...
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Reposted by Marco (with Long Covid)
Putrino Lab @putrinolab.bsky.social · 22/12/2024
I was asked this question on the other, less pleasant, platform. Basically: what drugs to I recommend for mitochondrial dysfunction. Here is my response (🧵): 1/
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Reposted by Marco (with Long Covid)
Sam @humanmanifold.bsky.social · 12/12/2024
Kostenübernahme inträvenöser Immunglobuline bei immunvermittelter Small-Fiber-Neuropathie: Nachdem die Krankenkasse ihren Antrag zuerst abgelehnt hat, kommt sie jetzt doch für einen befristeten Therapieversuch auf. #SFN #IVIG #LongCovid #MECFS #PostVac www.schwaebische.de/regional/sig...
schwaebische.de
Ihr großer Kampf wird belohnt: Hannah Stoll bekommt die Behandlung
Im Mai erhielt Hannah Stoll zum ersten Mal eine Diagnose für ihre Erkrankung. Dennoch wollte ihre Krankenkasse nicht für die Behandlung zahlen. Aber die 26-Jährige gibt nicht auf.
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Reposted by Marco (with Long Covid)
DrChronically M.D. @drchronically.bsky.social · 11/12/2024
Ein junger #MECFS -Patient hat um #Sterbehilfe gebeten. Die Eltern flehen mich an zu helfen - damit ihr Sohn überlebt. Der Sohn fleht mich an eine Stellungnahme zu schreiben und ihn in seinem Vorhaben sein unsägliches Leiden zu beenden zu unterstützen.
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Reposted by Marco (with Long Covid)
JN117 @jn117.bsky.social · 11/12/2024
I have not heard of this for long covid but I could be mistaken. Long acting monoclonals are being trialed for LC But here is an example where repeated vaccination treated post infection illness from flu. It is a fascinating account if you have not heard of it. www.healthrising.org/blog/2015/11...
healthrising.org
Carl-Gerhard Gottfries: A Swedish Chronic Fatigue Syndrome Vaccine Treatment Success Story - Health Rising
How Dr Carl-Gerhard Gottfries cure for his chronic fatigue syndrome disappeared before his eyes....
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Reposted by Marco (with Long Covid)
Sam @humanmanifold.bsky.social · 10/12/2024
Moderatorin leidet unter #LongCovid: "Wenn ich fit genug bin, gehe ich zweimal im Monat spazieren" www.t-online.de/region/berli...
t-online.de
"Hat mich verzweifeln lassen": Visa Vie über Long Covid – und ihren größten Wunsch
Während Corona für die meisten Menschen mit dem Ende der Pandemie verschwunden ist, kämpfen andere mit den Folgen der Erkrankung. Eine von ihnen ist die Podcasterin Lottie, die vielen als Visa Vie bek...
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Reposted by Marco (with Long Covid)
Eric Topol @erictopol.bsky.social · 11/12/2024
Categorization of #LongCovid into 4 subtypes based on symptoms, with further evidence of the increased risk from multiple infections and reduced risk by vaccination and boosters. www.thelancet.com/journals/ebi...
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Reposted by Marco (with Long Covid)
Eric Topol @erictopol.bsky.social · 09/12/2024
Huji Xu recognized by Nature as a top 10 who shaped science in 2024 Off-the-shelf CAR-T cells (CD-19 directed) for treating severe refractory autoimmune diseases. www.cell.com/cell/fulltex... www.nature.com/articles/d41...
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Reposted by Marco (with Long Covid)
PostX @postx.bsky.social · 09/12/2024
#LemonChallengeMECFS der ME/CFS Research Foundation, inspiriert von der ALS 🧊 Bucket Challenge. Beiß in eine 🍋- als Zeichen für den Schock, den ME/CFS für Betroffene bedeutet. Awareness & Spenden für die biomedizinische Forschung! lemonchallengemecfs.org Ich nominiere @molbaas.bsky.social
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Reposted by Marco (with Long Covid)
PolyBio Research Foundation @polybiorf.bsky.social · 08/12/2024
(1/2) PolyBio’s research director Dr. Amy Proal talked about #viruses as drivers of aging processes on Dr. Mike Lustgarten’s “Conquer Aging” podcast: youtu.be/Y1nLjjMd7xQ?...
youtu.be
Viruses Contribute To Aging And Age-Related Diseases: Amy Proal, PhD
YouTube video by Conquer Aging Or Die Trying!
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Reposted by Marco (with Long Covid)
Danielle Beckman @daniellebeckman.bsky.social · 05/12/2024
3 years ago, I was banging my head against the wall for months, trying to discover which type of immune cells were entering the brain after #COVID infection. Now we can all say together: neutrophils! And all starts in the nose and how mammalian airways evolved. Check out www.cell.com/trends/immun...
Manuscript in Trends in Immunology describing how the regional specialization within the mammalian respiratory immune system allows neutrophils to expand during infections, particularly in the aged brain.
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Reposted by Marco (with Long Covid)
Tom Kindlon @tomkindlon.bsky.social · 02/12/2024
Changes in cerebral glucose metabolism among mild long COVID patients: an [18F]FDG PET/CT study www.scielo.br/j/bjmbr/a/QK... Screenshot from Science for ME update #LongCovid #PASC #PwLC #postcovid #postcovid19
Brazilian Journal of Medical and Biological Research
Changes in cerebral glucose metabolism among mild long COVID patients: an [18F]FDG PET/CT study — Sakamoto et al.
"Twenty-two patients with mild long COVID cognitive symptoms and 20 healthy volunteers without cognitive, psychiatric, or neurological impairments and no history of COVID-19 infection underwent cerebral PET/CT scans using [18F]FDG to assess cerebral metabolism." "The analysis focused on identifying areas of hypometabolism and hypermetabolism, indicative of altered glucose metabolism possibly related to COVID-19's neurological impact. No statistically significant differences were found between the mild COVID and healthy groups."
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Reposted by Marco (with Long Covid)
medRxivpreprint @medrxivpreprint.bsky.social · 30/11/2024
Patient-Reported Treatment Outcomes in ME/CFS and Long COVID www.medrxiv.org/content/10.1101/202…
medrxiv.org
Patient-Reported Treatment Outcomes in ME/CFS and Long COVID https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Long COVID are persistent multi-syst
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Marco (with Long Covid) @etzsepp.bsky.social · 23/11/2024
If you have #longcovid or #mecfs - How much steps can you do per day ?
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Reposted by Marco (with Long Covid)
Sally Bourliakas @sallybourliakas.bsky.social · 23/11/2024
#LongCovid www.medrxiv.org/content/10.1...
medrxiv.org
Increased levels of inflammatory molecules in blood of Long COVID patients point to thrombotic endotheliitis
The prevailing hypotheses for the persistent symptoms of Long COVID have been narrowed down to immune dysregulation and autoantibodies, widespread organ damage, viral persistence, and fibrinaloid micr...
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Reposted by Marco (with Long Covid)
PropofolPrinzessin @propofolium.bsky.social · 19/11/2024
Im Bücherregal meiner Eltern stand ein Buch "Witze der Wende" Einer meiner Lieblingswitze daraus ist hoffentlich bald wieder brandaktuell: Treffen sich zwei Männer nach der Bundestagswahl. Fragt der eine: "Und, was haben Sie gewählt?" Sagt der andere: "FDP." Darauf der erste: "Ach, Sie waren das!"
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Marco (with Long Covid) @etzsepp.bsky.social · 18/11/2024
Bad news incoming …
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Reposted by Marco (with Long Covid)
Danielle Beckman @daniellebeckman.bsky.social · 12/11/2024
So, I never made an introduction post, but it's time for one! Hello there, friends👋! I am a Brazilian neuroscientist living in the U.S. My background is mixed, I am a clinical pharmacist who went on to do an MS in Biophysics and a PhD in Biochemistry. I came to the U.S in 2017, it started like this:
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Marco (with Long Covid) @etzsepp.bsky.social · 10/11/2024
Hey there #pwme and #pwlc👋 #longcovid #mecfs
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Marco (with Long Covid) @etzsepp.bsky.social · 21/09/2023
Another #longcovid fighter joined 🙏
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